Jaime Albert Trost was diagnosed with Right-Sided Congenital Diaphragmatic Hernia at 19 weeks gestation. He was born at 34 weeks gestation on 4/16/09 as a hemophiliac with his liver and intestines in his chest. Jaime had his 1st repair surgery at 23 days old. He re-herniated in September 2009, causing his bowels, kidney and liver to be up in his chest. He had his 2nd repair surgery at 194 days old. Though Jaime still has many medical challenges ahead of him, today he is a thriving KINDERGARTENER who has beaten the odds!

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Friday, September 18, 2009

Pneumonia...

So, it's finally been decided that Jaime has pneumonia. Rounds just ended. Jaime was requiring more O2 during the night...the resident was not up for increasing it...I could have killed her. In fact at one point (about 1:00 A.M.)I said that we should call Cincy and transfer. There were many great things about Cincy...in fact we were truly spoiled there. They have a specific CDH Team approach of attendings...not residents who don't know what they're doing calling the shots. That's what I was experiencing last night. The resident has NEVER dealt with a CDH baby before and was trying to convince me that his breathing was normal...let me just say, it's far from normal! They were basing this solely on his sats...not what he looked like. He did desat down into the 70's over night, but once he was put back up on his O2, he was satting in the high 90's again. Even this morning, the resident said in rounds that she felt we could wean his O2 again...WHY? He's breathing terrible. Between fast deep breaths with retractions to having apnea spells (not breathing at all). Why in God's name she would think this was normal is beyond me!
The nurse and I spoke after rounds, she will not be weaning him at all today! YEA! I also convinced the attending to call Jaime's attending in Cincy...if for nothing else, just to touch base! This is crazy...and all of this is due to "ego" issues! Last night just proved to me once again WHY we chose Cincy for delivery and treatment of Jaime! (We LOVE them!)
Now on to other things...Jaime's nutrition. He will most likely be put on a higher calorie preemie formula. Also, I was told that when I make Jaime's baby food to add butter and sugar just to boost the calories. Jaime is still not yet 12 lbs. He did grow, he's close to 24 inches...he's about 3% over all for his adjusted age....not on the charts at all for his "real" age. So, we'll be working on making that happen today.
As for OT, SP and PT....we met with OT and SP. They are great! The SP actually knows and LOVES Ann from Cincy! :-) Anyway the girls said that Jaime will have homecare therapy, that he should NOT be going outside the home for therapy. We'll have an order before we leave here for that.
So other than the fact that Jaime's room mate was just discharged...YEA, not much else is going on! We'll be staying put for a "minute."
Here are two pics of Jaime in his funny dome hood bed!
I'll write more later if there are any further changes.

8 comments:

  1. sdigregorioSeptember 18, 2009 at 10:46 AM

    Ugh, what a crazy few days you have had! Well...at least they finally figured out what the issue is, but I'm sorry that it has been a trying time with the docs there. I wished we both lived closer to Cincy! They really are the BEST! Hope Jaime has a quick turnaround and can go home soon! I hope Jaime starts packing on the ounces!

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  2. Sue mom to Emily LCDH 1-22-08September 18, 2009 at 11:38 AM

    What complete nonsense!!! How can that nurse even think about lowering Jaime's oxygen when he is visibly struggling????? I hope you get in touch with Cincy, at least to make them aware of Jaime's condition. Good news about therapy, but adding butter and sugar to his formula seems...odd. Hope it helps with the weight gain.

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  3. Tracy MeatsSeptember 18, 2009 at 12:05 PM

    Praying for Jaime! Hope your sweet boy is feeling better soon. If things get worse, get that transfer to Cincy.

    Hugs, Tracy

    P.S. Well wishes coming you way too!!

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  4. BethSeptember 18, 2009 at 1:43 PM

    So sorry to hear that Jamie has Pneumonia. I hope he feels better soon. I definitely agree about Cinci hospital. We are so glad that we went there for Carter's delivery and treatment. We had the same problem - the docs in Chattanooga refused to call Cincinnati due to egos which stinks. That is interesting about adding sugar and butter to the formula (not rice or oatmeal?)

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  5. Bev LSeptember 18, 2009 at 3:23 PM

    I am so sorry about the pneumonia. I know that you get really spoiled here and I am so thankful that I am where I am. Unfortunately the floor is not like the NICU. That is great about therapy though, especially with the winter quickly approaching and the swine flu panepidemic. I hope things start to get better, and you can get home. There truly is "no place like it." Thinking and praying for you. Take care.

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  6. ElizabethSeptember 18, 2009 at 4:14 PM

    Sheryl - you can request NO Residents Period. You don't have to put up with that at all! You sound like me - ;-). Mommy from Hell Modes - they better duck quickly! It isn't a bad thing we KNOW our children!

    Now, this said - we had amazing surgical Residents at UVA for Noah. Not to bash residents at all. Sometimes there is just one that ruins it.

    Keeping you all in my thoughts and prayers and I hope Sir Jaime recovers quickly and is home!
    Elizabeth

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  7. Dale and MajkenSeptember 18, 2009 at 5:23 PM

    Sheryl, just a note to let you know that we are very sorry to hear that Jamie is in the hospital, and really sorry that a resident has failed to listen to the mother of a baby - since you are an expert in the care of this wonderful little boy! Maybe this doctor is just too inexperienced to handle Jamie - get someone else.

    Our love and prayers are with Jamie, you, Tom and Jared, miss you, Dale and Majken

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  8. DarcySeptember 19, 2009 at 9:43 AM

    Sheryl,
    Keeping you and little Jaime in my prayers.
    Hope that he improves quickly and you can have him back home.
    darcy
    http://ittybittyblog.wordpress.com

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